Questions on Life Satisfaction for Adolescents and Adults With Cystic Fibrosis

CHEST Journal ◽  
2003 ◽  
Vol 123 (1) ◽  
pp. 42-48 ◽  
Author(s):  
Lutz Goldbeck ◽  
Tim G. Schmitz ◽  
Gerhard Henrich ◽  
Peter Herschbach
Keyword(s):  
Cystic Fibrosis ◽  
Life Satisfaction ◽  
Adolescents And Adults

scholarly journals The Relationship between Body Composition, Dietary Intake, Physical Activity, and Pulmonary Status in Adolescents and Adults with Cystic Fibrosis

Nutrients ◽  
2022 ◽  
Vol 14 (2) ◽  
pp. 310
Author(s):  
Kevin J. Scully ◽  
Laura T. Jay ◽  
Steven Freedman ◽  
Gregory S. Sawicki ◽  
Ahmet Uluer ◽  
...  
Keyword(s):  
Physical Activity ◽  
Cystic Fibrosis ◽  
Body Composition ◽  
Dietary Intake ◽  
Healthy Volunteers ◽  
Clinical Outcomes ◽  
Body Fat ◽  
Lean Mass ◽  
Cross Sectional ◽  
Adolescents And Adults

Measures of body fat and lean mass may better predict important clinical outcomes in patients with cystic fibrosis (CF) than body mass index (BMI). Little is known about how diet quality and exercise may impact body composition in these patients. Dual X-ray absorptiometry (DXA) body composition, 24-h dietary recall, and physical activity were assessed in a cross-sectional analysis of 38 adolescents and adults with CF and 19 age-, race-, and gender-matched healthy volunteers. Compared with the healthy volunteers, participants with CF had a lower appendicular lean mass index (ALMI), despite no observed difference in BMI, and their diets consisted of higher glycemic index foods with a greater proportion of calories from fat and a lower proportion of calories from protein. In participants with CF, pulmonary function positively correlated with measures of lean mass, particularly ALMI, and negatively correlated with multiple measures of body fat after controlling for age, gender, and BMI. Higher physical activity levels were associated with greater ALMI and lower body fat. In conclusion, body composition measures, particularly ALMI, may better predict key clinical outcomes in individuals with CF than BMI. Future longitudinal studies analyzing the effect of dietary intake and exercise on body composition and CF-specific clinical outcomes are needed.

scholarly journals Depression and anxiety in adolescents and adults with cystic fibrosis in the UK: A cross-sectional study

2014 ◽  
Vol 13 (6) ◽  
pp. 745-753 ◽  
Author(s):  
Alistair J.A. Duff ◽  
Janice Abbott ◽  
Carolyn Cowperthwaite ◽  
Clare Sumner ◽  
Margaret A. Hurley ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Cross Sectional Study ◽  
Depression And Anxiety ◽  
Sectional Study ◽  
Cross Sectional ◽  
Adolescents And Adults ◽  
The Uk

scholarly journals The psychosocial and psychiatric side of cystic fibrosis in adolescents and adults

2003 ◽  
Vol 2 (2) ◽  
pp. 61-68 ◽  
Author(s):  
P.E. Pfeffer ◽  
J.M. Pfeffer ◽  
M.E. Hodson
Keyword(s):  
Cystic Fibrosis ◽  
Adolescents And Adults

scholarly journals Validation of the Dutch cystic fibrosis questionnaire (CFQ) in adolescents and adults

2004 ◽  
Vol 3 (1) ◽  
pp. 29-36 ◽  
Author(s):  
Peter H. Klijn ◽  
Henk F. van Stel ◽  
Alexandra L. Quittner ◽  
Janjaap van der Net ◽  
Wytze Doeleman ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Adolescents And Adults ◽  
Cystic Fibrosis Questionnaire

scholarly journals Assessment of a Mobile App by Adolescents and Young Adults With Cystic Fibrosis: Pilot Evaluation

10.2196/12442 ◽  
2019 ◽  
Vol 7 (11) ◽  
pp. e12442
Author(s):  
Isa Rudolf ◽  
Katharina Pieper ◽  
Helga Nolte ◽  
Sibylle Junge ◽  
Christian Dopfer ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Life Satisfaction ◽  
Young Adults ◽  
Lung Function ◽  
Mobile App ◽  
Adolescents And Young Adults ◽  
Self Management ◽  
Lung Function Decline ◽  
High Treatment ◽  
Observation Period

Background Cystic fibrosis (CF) continues to be the most common life-limiting chronic pulmonary disease in adolescents and young adults. Treatment of CF demands a high treatment time investment to slow the progression of lung function decline, the most important contributor to morbidity and mortality. Adherence is challenging in CF due to the high treatment burden and the lack of immediate health consequences in case of nonadherence. Lung function decline is particularly pronounced in the transition phase between 12 and 24 years of age. The improvement of self-management and self-responsibility and independence from parents and desire for normalcy are conflicting aspects for many adolescents with CF, which influence adherence to the time-consuming pulmonary therapy. Mobile health (mHealth) care apps could help to support self-management and independence and thereby reconcile seemingly conflicting goals to improve adherence, quality of life, and ultimately CF life expectancy. Objective This study aimed to (1) assess user behavior and satisfaction among adolescents and young adults with CF over an observation period of three months using an mHealth app; (2) identify areas of improvement for this mHealth app; and (3) compare overall and disease-specific satisfaction, lung function, and anthropometry before and after using the mHealth app. Methods A total of 27 adolescents and young adults with CF (age range 12-24 years, mean age 16 years, SD 3 years; 14 females, 11 males) used a free mHealth app for three months of whom 25 provided questionnaire data for analysis at the end of the study. Data collection was carried out using questionnaires on usage characteristics and life satisfaction, and standardized assessment of lung function and anthropometry. Results The use of the reminder function for medication declined from 70% (15/21) of the participants at week 4 to 65% (13/20) at week 8 of the observation period. At the end of the study, only 17% (4/23) of the participants wanted to continue using the app. Nevertheless, 56% (14/25) of participants saw the mobile app as a support for everyday life. Potential improvements targeting hedonistic qualities were identified to improve mHealth app adherence. Comparisons of satisfaction with different life aspects hinted at improvements or stabilization for the subitem respiration and the subitem lack of handicap by CF, suggesting that app use might stabilize certain CF-specific aspects of the weighted satisfaction with life. Lung function and anthropometry were not affected consistently. Conclusions Most of the patients did not want to continue using the app after the study period. Only a few CF-specific aspects of weighted life satisfaction were possibly stabilized by the mHealth app; clinical parameters were not affected. Adaptation of the functions to adolescent-specific needs could improve the long-term use and thus positively affect the disease course.

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